Reciprocity and Social Capital in Sibling Relationships of People with Disabilities
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View metadata, citation and similar papers at core.ac.uk brought to you by CORE provided by University of Massachusetts Boston: ScholarWorks at UMass SIBLINGS AND SOCIAL CAPITAL 1 RUNNING HEAD: SIBLINGS AND SOCIAL CAPITAL Title: Reciprocity and Social Capital in Sibling Relationships of People with Disabilities John Kramer, Ph.D. Institute for Community Inclusion, University of Massachusetts Boston Allison Hall, Ph.D. Institute for Community Inclusion, University of Massachusetts Boston Tamar Heller, Ph.D. Institute on Disability and Human Development, University of Illinois at Chicago As appeared in: John Kramer, Allison Hall, and Tamar Heller (2013) Reciprocity and Social Capital in Sibling Relationships of People With Disabilities. Intellectual and Developmental Disabilities: December 2013, Vol. 51, No. 6, pp. 482-495. https://doi.org/10.1352/1934-9556-51.6.482 SIBLINGS AND SOCIAL CAPITAL 2 Abstract Sibling relationships are some of the longest-lasting relationships people experience, providing ample opportunities to build connections across the lifespan. For siblings and people with intellectual and developmental disabilities (I/DD), these connections take on an increased significance as their families age and parents can no longer provide care. This paper presents findings from a qualitative study that addresses the question, “How do siblings support each other after parents no longer can provide care to the person with I/DD?” Findings in this study suggest that siblings with and without disabilities experience reciprocity as a transitive exchange, which occurs through the creation of social capital in their families and community, and that nondisabled siblings mobilize their social capital to provide support to their sibling after parents pass away. Implications for future research as well as policy and practice will be discussed. SIBLINGS AND SOCIAL CAPITAL 3 Introduction Sibling relationships are some of the longest-lasting relationships humans experience (Cicerelli, 1995; Goetting, 1986), offering extended relationship experiences over the life course. A key aspect of sibling relationships is the dynamic ways siblings use their resources to support each other at different points in each other’s lives. This paper examines support reciprocity as a transitive exchange, meaning that feelings of support and of being supported are not perceived as equal across two people in a relationship, but might be across multiple people. This also may provide opportunities for building social capital in sibling relationships when one of the siblings has an intellectual and developmental disability (I/DD) at the point after their parents are no longer primary caregiver to the person with I/DD. Aging presents a set of important issues unique to families of people with disabilities. Researchers concerned with the support needs of families of people aging with intellectual and developmental disabilities have recently expanded their interest in adult sibling relationships (Dykens, 2005; Greenberg, Seltzer, Orsmond, & Krauss, 1999; Greenberg, 1993; Heller & Kramer, 2006; Seltzer et al., 2005; Stoneman, 2005). Siblings often play an expanded role in the provision of support for aging people with I/DD as parents become unable to provide care or pass away. In recent years, an increasing number of adult sibling authors, researchers, and other leaders have begun speaking publicly about their experiences and relationships with their adult siblings with disabilities, as well as calling for increased support in their new role as caregiver (Meyer, 2009; The Sibling Leadership Network, 2008). This expanding interest in adult sibling relationships may be related to increased lifespans of people with I/DD. These longer lifespans require an extension of support, much of which SIBLINGS AND SOCIAL CAPITAL 4 remains informal and family-provided (Heller & Factor, 1991, 1993; Heller & Kaiser, 2007; Heller & Kramer, 2006; Heller, Miller, Hsieh, & Sterns, 2000). Parents often expect their adult children without disabilities to step in when they relinquish their caregiving responsibilities (Freedman, Krauss, & Seltzer, 1997), and, as they grow older, often identify their other children to be primary caregivers (Heller & Factor, 1991, 1993; Heller & Kaiser, 2007; Heller & Kramer, 2006; Heller et al., 2000). One of the key issues in sibling research is the concept of reciprocity. Typical sibling relationships are diverse, but overall characterized as being “reciprocal” across the life span (Cicirelli, 1995). Reciprocity is the “notion that if you receive something from others, you are expected to give something in return” (Bubolz, 2001). Among siblings of a brother or sister with I/DD, these relationships tend to be more “asymmetric” in reciprocity, with nondisabled siblings providing more support to siblings with I/DD than they receive from those siblings (Stoneman & Berman, 1993). Reciprocity in the context of adult sibling relationships where one sibling has a disability has been conceptualized by the inequality of emotional, physical/practical, and financial resources shared (Stoneman & Berman, 1993). Implicit in much of this work is that functional sibling relationships should, all in all, be roughly equivalent in the amount of support given and received between both members of a sibling pair. When the relationship does not measure up to this, it is thought to place a burden on the net support giver. Some evidence exists that such sibling relationships in adults are similar in reciprocity to typical sibling relationships of adulthood (Doody, Hastings, O'Neill, & Grey, 2010). Hall (2005) found evidence that relationships of individuals with I/DD were reciprocal among siblings, parents, and adult children, but did not assess whether the reciprocity was equal. Others found SIBLINGS AND SOCIAL CAPITAL 5 little evidence of symmetric reciprocity between people with I/DD and their family members (Lunsky & Benson, 1999). These inconsistencies may suggest a gap in our understanding of how siblings experience and expect reciprocity. We do not know whether siblings of people with disabilities have expectations that their brother or sister with disabilities will provide them with support commensurate with what they gave them, or whether others in their network provide support to the person with disabilities. Little research exists on the extent to which reciprocity occurs across a network of family and friends, sometimes called a “transitive” exchange (Louch, 2000), or the extent to which transitive reciprocity may produce social capital for the sibling with a disability. Using this idea, social capital could be created through transitive exchanges within networks of support, rather than a one-on-one reciprocal exchange between a person with a disability and his or her sibling. Social capital consists of “shared norms or values that promote social cooperation, instantiated in actual social relationships” (Kiernan & Mank, 2011). Social capital creation can be used as a way to conceptualize reciprocity, especially in social support, which an individual builds and mobilizes within the family and community over time (Furstenberg, 2005). Additionally, social capital can be used to accomplish complex tasks or achieve goals that would be unattainable on one’s own (Devlin, 2011) through “bridging” and “bonding.” Bonding social capital exists between members of a group who “see themselves as equal” and as having some sort of uniting characteristic. Participation in specific groups such as neighborhood associations or advocacy organizations promotes an effective bond between individuals within this group. According to Putnam, these bonds form the “superglue” that enables community solidarity. SIBLINGS AND SOCIAL CAPITAL 6 Bridging, on the other hand, serves as the “sociological lubricant,” in which professional affiliation, rather than personal characteristics, drives the connection. Bridging social capital allows individuals to be connected to resources and information that would be otherwise unavailable through bonding social capital. Social capital changes over the course of one’s life. In childhood, family members serve as role models for how to engage in reciprocal and meaningful relationships with others. One’s personal and family networks lay the foundation (Belcher, Peckuonis, & Deforge, 2011; Gotto, Calkins, Jackson, Walker, & Beckmann, 2010) for social capital formation that constitutes the “aggregate” of family resources (Belcher, et al., 2011; Gotto, et al., 2010; Mueller, Houser, & Riddle, 2009) that facilitate the successful transition of children to adult life. Most individuals’ social networks transition from family-centered to peer and friendship-centered networks as the individuals get older and leave their family of origin (Gray, 2009). However, for people with I/DD, this pattern differs, as they often remain closer to their familial networks as they age (Knox & Bigby, 2007). This could have important implications for connecting to resources and supports throughout ones’ life. Social capital also arises from “the exchange of resources or supports or services between people” that “is not based on the immediate return requirement…but rather the notion that people…have a general expectation that someone (emphasis added) will return the favor at some time in the future” (Chenoweth, 2004). In other words, social capital is not created through quid pro quo in individual relationships. Under this concept, reciprocity is assessed on a general level as an aggregate